Survey to assess cost of autism to families

The cost of raising an autistic child is set to be assessed as part of a national survey by a researcher, who found the average annual cost to families is €6,600.

Last winter, Áine Roddy, an Irish Research Council and Hardiman PhD Scholar in Health Economics at NUI Galway, conducted a pilot study of 31 families.

She discovered the average cost for out-of-pocket expenditure per family over the previous 12 months due to having a child or children with an autism spectrum disorder (ASD) was €6,614.78.

Survey to assess cost of autism to families

“It is important to note that many parents still felt that their child had unmet needs, but they could not afford to spend any more money,” said Ms Roddy.

The findings included living costs such as special diets, repairing damage, care and assistance, special activities, educational costs, medical costs, and training supports costs, and was based solely on the extra costs incurred for families as a direct result of having a child/children with ASD.

Ms Roddy, whose research has the backing of Irish Autism Action (IAA), said parents often spent large sums of money on the assessments required to determine the level of support their child needed and to back up their claims for such support.

“Waiting lists are long in the public system, up to three years in some cases,” she said. “Parents can’t wait indefinitely and they end up paying privately for specialists to assess their child.

“An assessment by one specialist could cost €700. But they could spend up to €2,000 on a multi-disciplinary assessment.”

And even if children were granted supports such as speech and language therapy or occupational therapy on foot of assessment, in the public system it may consist of just six sessions per year, while in reality they needed intensive therapy on a weekly basis.

Then there was the cost of lost employment, where one parent gave up their job to look after the child while they still had mortgage payments to maintain taken out at a time when two salaries were coming into the home.

Preliminary findings of Ms Roddy’s research indicate families had got into debt, some taking out loans to do home renovations for the purpose of creating sensory spaces for the benefit of their child.

Ms Roddy hopes the findings of her study, the first of its kind, will be used to inform public policy to meet the needs of those who lives are impacted by ASD.

Parents and families have the opportunity to make their voices heard by completing the confidential survey which can be downloaded from the IAA website and returned by email or freepost to Áine Roddy. Alternatively, participants can request that the survey is posted to them.

The closing date to complete and return the survey form is Friday, October 23, with those who do so in the running to win one of five iPads donated by IAA.

One in 100 people are affected by an ASD, yet there is no register or data available on the numbers who access services or require them.

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